
Our Story
Meet the Family
Why We Started
Our story began in 2008 when our daughter, Ali, told us she had an eyeball headache behind her eyes and blurred vision. Blood test results were shockingโpointing to a little-known autoantibody against a protein called aquaporin-4 (AQP4). Our beautiful Ali was diagnosed with Neuromyelitis Optica (NMO), a life-threatening autoimmune disease that attacks the central nervous system. At only 14 years old, the doctor estimated Ali could become blind and paralyzed or not with us at all within the next four years.
Her out-of-the-blue diagnosis changed everything. At the time, so little was known about this rare “orphan” disorder, and it was difficult to find anyone with the same diagnosis. We spent countless hours scouring the Internet and looking for support, only to be left with few answers.
Accepting the frustration and despair wasn’t an option. On August 1, 2008, we founded The Guthy-Jackson Charitable Foundation and immediately started funding research to help solve the mysteries of NMO and pioneer solutions. Instead of relying on traditional science models, we connected experts within and beyond the field of neurology and from around the world to share research and enable life-saving discoveries.
Against All Odds
Taking on a rare disease requires commitment. Since 2008, we have invested more than $70 million and funded 90+ research studies to understand how NMO works and accelerate solutions. As a result, our work has revolutionized the field. We formed an international panel to rewrite the diagnostic criteria for NMO to speed accurate diagnosis and best therapy. We sponsored the CIRCLES study with its dedicated biorepository to understand the NMO patient experience and provide data and biospecimens for groundbreaking discoveries. We have hosted annual RoundTable Conferences for researchers and Patient Days for patients and caregivers-inspiring all stakeholders on our mission. We created the GJCF International Clinical Consortium for NMO, led innovative clinical trial designs and brought the industry together in ways rarely done. After investing time and so much heart into research, three therapies were approved for NMO from 2019-2020. There had been none for over 100 years.
Where We are Now
For nearly two decades, the Guthy-Jackson Charitable Foundation (โGJCFโ) has led the mission to cure NMO. Breakthroughs in understanding and treating NMO made so far are already saving and improving countless lives. These advances enable us to take the next great leap on our mission to cures. We are deeply grateful for all who participated in our workโand your incredible outpouring of love and support on this journey together.
We now proceed to the last mile of our mission: working to cure NMO and autoimmune diseases once and for all. This bold next step will require all of our energy and focus. In this spirit, the Guthy-Jackson Research Foundation is proud to advance its next phaseโ Mission: Cureageous. Please expect more news to come soon regarding this exciting next chapter of the GJCF journey.
We appreciate all of the advocacy organizations that will continue to help patients, families & caregivers benefit from the breakthroughs made for those facing NMOSD and MOGAD. We wish them all success in carrying the bright advocacy torch forward into the future.
Onward to CuresโWe are Cureageous !
With hope & gratitude,
Victoria Jackson & Bill Guthy
Our Vision
To live in a world in which no one suffers from Neuromyelitis Optica or any autoimmune disease.






